Wednesday, May 30, 2012

This is the Annual CDC Fun Fair. Have I mentioned that I LOVE THIS SCHOOL. So as an incentive, the last month of school the kids are awarded "Fun Money" for making good choices, choosing challenging work during choice time and in general being good. Then, the use this "Fun Money" at the Fun Fair. It is so much fun, complete with face painting, carnival games, jumping tent, snack booth and general store. It all costs money, but they will not accept money from mom or dad. They only money that is good at the Fun Fair is the money they earned that month. Luckily Livi was loaded so we had more than enough money to play anything we wanted. She even treated me to snacks.

Face painting

Action shot in the jumping tent

Hanging with Lexi - she was our partner.

Master Hoola Hooper

This was a relay race that she did with Jackson. Unfortunately she inherited my running capabilities so they got honorable mention:(

And with out further ado, here she is. . . . (she is the second to the last)

This one is just of the standing ovation they received. Uncle Gary had told her to listen for his whistle so she would know he was there. You will see her jumping up and down when she hears his whistle.

Friday, May 25, 2012

So here we are. Three years have come and gone. I still remember the first year she attended Clifton and having to let our little girl go on the big yellow bus off to school. I was the hardest thing to do, an now look at her. Graduating from Pre-Kinder! ﻿

I had no idea it would be so emotional. It started off with this beautiful song. They are the Clifton Caterpillars, and the song was about how they started off as caterpillar's and are now they are beautiful butterflies, spreading their wings and flying. So of course, at this point I lost it. Check out Roger's reaction. Not sure if he was equally as moved or just sweating because it was hotter than h-e-double hockey sticks. Either way, God love him for standing up their with his daughter!

Then after the song, they all shuffled off stage and were introduced one by one to come and receive their diploma - complete with graduation cap.

Of course, she took a little longer than most, but you should have heard the applause when she got to the podium

Here she is with Mrs. McNeese

And these are the lovely ladies that have been with her since the beginning - THREE YEARS! Mrs. Morton, Ms. Maribel and Mrs. Graber. Love these ladies!

Still can't believe my girl is going to Kindergarten next year! I know she will be a great Lively Eagle!

Saturday, May 12, 2012

So, after the Mother's Day Breakfast (read below) school is out for the day. I thought for a second about taking a half day and then finding someone to watch Olivia, but I decided, to heck with it! I'm taking a whole day off and Livi and I are going to have some fun!

First stop. . . . . . . . CHUCK E. CHEESE!!! Yes, I know you are shocked, because I hate it. And if you saw Olivia's birthday interview you will know that of all that I have done for the kid in four years, the thing she is most grateful for is the fact that I took her to Chuck E. Cheese ONCE when she was younger. So I had promised her that when she passed her Star books at school ( a level they use at school for reading) that I would take her to celebrate at Chuck E. Cheese. Well she wasn't forgetting that one and I figured it would be less painful to go during the day on a weekday, so we did it. Luckily her bestie Faith and her mom were able to some too. Here is Faith in the wind tunnel catching tickets!

Olivia watched Faith and came up with some strategies of her own.

My favorite of those strategies was stuff your bra with tickets!!!!

Thelma & Louise

And ride 'em cowgirls!

We then headed for a movie - because we were going to make the most of the day darn it! Here she is doing the movie ratings for the previews. Thumbs up of course means you will definitely see it, thumbs sideways is a maybe or netflix rental and thumbs down is no way! She doesn't have a very discriminating opinion because she gave 2 thumbs up to every preview. Don't know who is taking her to all those movies.﻿

Friday, May 11, 2012

This year I had the pleasure of being invited to the CDC Mother's Day Breakfast. It was such a nice treat. The kids sang beautiful songs about their mothers, then they were called up one by one and asked embarrassing questions about their mothers. Luckily, Liv didn't embarrass me too much. ﻿

Here she is with her besties. As tall as she is, she is the youngest of the click. Unfortunately that means that next year they are moving on to the big KINDERGARTEN and she will have one more year at CDC. That's ok - she will be a great helper for Mrs. Stipes and Mrs. Devore.

Wednesday, May 9, 2012

For those that don't know, Olivia just barely turned four the end of February. She has been attending Children's Discovery Center this year which is Montessori. We have loved her being there. There are kids at all levels in her class which is what we love. There is no pressure, but if kids are ready, they move on. We have intentionally put no pressure on her. I mean she was 3 and in pre-kinder. I knew she would have another year of pre-kinder so I figured she has plenty of time. We do all the normal stuff like reading at bedtime but other than that, I take my teacher hat off when we get home. So I was so surprised when she came home and said, "Mommy, tonight I am going to read you a bed-night story!" Okay, I figure she is going to "read the pictures" right? OMG! I was so thrilled when I heard her read this book to me. Roger was mildy impressed, but he was like, "Is that really THAT hard?" Um Yes! Yes it is. I teach 1st grade and have had countless kids that CAN'T do this yet. She is using strategies that I teach kids to do year after year and she is already doing them. Yes, my friends, this was a very proud moment for both the mommy in my and the teacher!

Monday, May 7, 2012

Rett Syndrome is really tough. Not just for the obvious reasons, you know the seizures, watching your daughter being trapped in a body that doesn't work, not being able to talk to your daughter. All of those things make it tough for sure, but what really makes it rotten that just when you learn to cope with things, just when you get your mind right and in a positive place, just when you think for a second "we can handle this!" Rett Syndrome kicks you in the knees and makes you cry for mercy again. I hate it. It's like things are fine for weeks and then suddenly take a turn for the worst. We had gotten over the scoliosis blow and things were going ok. Uneventful. Seizures pretty much under control, therapy in full swing and then with out any warning BAM! In what seemed like a blink of an eye, I look at my kid and she is nothing but bones. The kid who had never had a problem packing on pound and likes to eat everything is suddenly struggling. After more careful thought, yes, her appetite has decreased and it's getting harder and harder and taking longer and longer to get her to eat a full meal. It currently takes us at least 1 hour plus to get her to eat one meal. And for all you working parents you know that one hour is not feasible for breakfast on school morning. This has been one of our biggest fears since many girls with Rett are tube fed. I don't know why, this for us has been such a HUGE fear. Like more than seizures or anything else we have had to go through. I think because eating is one way she is "normal" or "average". And she enjoys food. I think it would break my heart into a million pieces if she wasn't able to enjoy birthday cake or pizza or the occasional McDonald's cheeseburger that she loves. So we made an appointment with a nutritionist. It's not too bad. She is average weight for a child of her age and height, however seriously concerning that she has lost 3 lbs since February. The problem is that chewing (like everything else for Juliana) is physically taxing on her body. It literally wears her out. So the plan of action - Go back to feeding therapy to help strengthen the muscles used to eat and chug down some pediasure. If this doesn't work we may have to start pureeing her food (which would also break my heart) and then if that doesn't work, I don't want to think what comes next. I am hopeful plan A will work and that will be the end of it. PRAYERS PLEASE - WE NEED A CURE!!!!

Sunday, May 6, 2012

This weekend was the girls last day of Sunday school for the year. Like everything else this has been a great year with lots of learning. We were a little, let's say curious, how Juliana would be accommodated in this religious education class. It's not like public school, where these things are to be expected. These are volunteers who may or may not have had training or experience with special needs children. I have to say we were very pleased and proud of our church. Their teachers, although new to this, were awesome and loved having her in class. And the diocese as a whole has taken on a new initiative for special needs kids. They want to do everything to make them feel included and give them the same religious education that all kids have. This year, Roger and I took turns going with the girls to class to assist. It's not like we are these over bearing parents that don't trust people with our kids, it's just that it takes awhile to "learn" Juliana and with this being a once a week class, teachers don't really have that luxury, so we stayed to help out. Well, because our diocese is working so hard, they have told us that they may have trained people in place in the fall so that we may leave her in class without one of us having to stay with her. How awesome! Not that I don't love going to Sunday school, but what kid wants their parent around 24/7. I think she wants independence.﻿

This week we decided we would both go since it was graduation and all, so here is Roger and girls taking in the lesson

I guess only Roger got the joke

Music time with instruments!

Juliana being presented her certificate and necklace

Olivia being presented her (pretend) certificate. She was technically not enrolled because she was only 3 years old in the fall. You have to be 4 to start in the pre-school class. She didn't know the difference, now we will just have to figure out how to explain to her that she will be in the same class again next year and Juliana will be moving on.